Category: dying

What Can I Do?

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It’s been nearly two weeks now. In typical times, I’d be back in Wisconsin probably getting ready to make my trip back to Minnesota. Family would be all together. We’d have laughed and cried and laughed again. We’d have all come together with prayers and stories. We’d have gathered together in Dacada around the spot where Mom lies and laid Dad’s ashes down beside her and maybe gone over across the street to have Uncle Nicky make us all a Old Fashioned to commemorate the day.

These aren’t typical times. Instead of coming home from Wisconsin and time with family, I just got home yesterday from Mayo clinic and surgery. The last two weeks have mostly been a blur. Coming home from epilepsy monitoring, Dad’s death, going back to Mayo for surgery, spending some time at Ann and Christopher’s house.

Today is the day that my tears start to flow again. Tears of thankfulness for the dear friends who’ve held me together and been watching out for me in these recent days. I really do feel so incredibly lucky to have been gifted with people like that in my life, those friends and family who are smart enough to see when I need them and to step right in, not waiting for me to figure it out. I tend to be rather slow in figuring out such things for myself.

Tears today too as I spend my day just resting and relaxing. The pause is giving me the chance to just randomly have these moments where my system seems to say “Dad is dead.” It’s coming to that point where it’s real and none of the age old ceremony that we relied on is there, only the questions of what is the right way to honor the passing of our loved ones now?

It’s different than when I was a little girl and Mom died. First, I was a little girl. Secondly, I was surrounded by family and friends and immersed in the ceremonies. It was too much for a little girl. The pain was far too real and too constant. This is different. With Dad I know it will be okay. I know he’s found his peace and that the sadness is my own. I know that I will always miss him. That’s not going to change, but I’ll laugh at the stories and seeing his grandchildren smile in the way he used too will touch my heart and give me faith. Still, this is that sneaky sadness and it just hits me with no forewarning, tells me that he’ll never give me one of his Dad kisses again, that I’ll never get to hug him one more time. All I know in that moment is that I want that one more hug, that one more Dad kiss, and it’s all gone.

I guess hugs and kisses are something that are handed down. My Dad hugged and kissed kids and grandkids like his aunt Sr. Christine used to. Maybe the only thing to do is keep handing them down. Keep the hugs and kisses going. Keep telling the stories. Honor the spirit. Guess I’m just going to have to be the old auntie with hugs and kisses. That’s what I can do.

You know it doesn’t really matter what else we do. Nothing really is bigger. Dad used to make point of giving me a hug and kiss every time I came to visit. We always made a point to tell each other that we loved each other. As a young adult, I found it kind of goofy. As I aged and Dad got old, I came to appreciate it and recognized how much it meant to him. Now, I think I’ve come to realize the gift he gave me in that little action. That little act told me that I was somebody special and now I get to always carry that with me.

Wow. If there’s someone in your life that you value, please tell them again and again. Please give them the gift that my dad gave me and let them have that treasure of feeling value and self-worth. It is an incredible gift.

A New Life

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I’ve done it. Surgery was this morning. I got to the hospital at 5:45 and went into the operating room about 8am. I guess surgery started by 9 and I was done about 11am.

The anesthesia was the worst part. Thank goodness for good friends. Ann got us a hotel so I didn’t have to try to make the ride back to their house. Instead, I just had a mile ride to the Kahler Suites and an afternoon to sleep and get my stomach back under control.

I can’t turn my neck. It will be a few weeks to heal. I’m checking to see if Buddy can go to doggie camp for the rest of the week. After that I’ll need a dog walker for at least a week. After that we should be back on track.

I am really feeling proud and relieved. I did it. I am starting a whole new part of my life. Mom and Dad would be so proud. There it is. My VNS is implanted, close to my heart– right where Mom and Dad are. Just a couple weeks and we’ll turn it on. Let’s hope this thing works!

Life on My Mind

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My dad died exactly a week ago today. Two weeks ago was the 36th anniversary of my mom’s death. Tomorrow, I go into surgery.

No, I’m not concerned for my life. I am looking at my surgery as a step in my mourning process though. They gave me so much giving me life. Getting my VNS implanted now seems the way to say thank you. I have heard so much about the benefits. I am so hopeful for this opportunity to regain the life that was given me.

I can only imagine what might be. Will I be able to focus better? Will I remember more? Will I regain energy? How much will my seizures be reduced? Will I drive again? What dreams might I achieve? Will I act again or maybe go further with my writing? Maybe get back to running or the gym? There are so many options so much to do. So much life to live.

It is a strange thing. The VNS is a small device. I understand that it’s about the size of a half-dollar. It’s like a pacemaker for the brain. That’s what is odd to me. I am only 48. It feels strange to have something implanted in me and to have it compared to a device so often used for the elderly. As a middle-aged unmarried woman with epilepsy, I run a high risk for SUDEP (Sudden Unexpected Death due to Epilepsy). My VNS device might protect me. It also reminds me right now of my mortality. Right now, I am trying to remind myself that someday dying also means right now living and that living is the focus. Dying will take care of itself when it is time. It’s just a whole lot of life on my mind right now.

Where Strength Comes From

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Laying here at Mayo on day seven of my epilepsy monitoring unit experience, waiting for seizures and wondering when I will get that heartbreaking message to let me know that my dad’s journey has taken him to the spirit world. I find myself thinking about the history that cradles me in its arms and provides me strength.

Our strength is not solely our own. It comes from the generations before us who have brought us to this place. These days I find myself thinking of many people, one is my great-aunt Sr. Christine.

Sr. Christine was born in 1898 in Wisconsin. She grew up on a farm in outside of Port Washington. Many Catholic families of that time were pleased to have children grow up to be nuns and priests. I don’t know if my great-grandparents wanted Sr. Christine to become a nun, but I do remember hearing that they were unhappy with her choice to join the School Sisters of Notre Dame. They had apparently wanted her to be a Franciscan. But, Sr. Christine was a determined young woman who’d heard her calling and followed it despite the unrest that it caused in her family.

My memories of her are of visits to the convent where she lived in her latter years. I think of that little blue room that she lived in. She had her bed, a small wardrobe, and her chair. I don’t remember any other furniture. I don’t remember if there were more chairs for guests. I suppose there were or maybe we brought them in from another room. Her life was simple. Yet every time we visited she had a smile on her face and was delighted to share in conversations with many questions about how all the family was doing. I remember too how every time we went to visit she would have me or maybe mom or dad go to her wardrobe to pull out a little gift for me, usually a prayer card though once she gave me a lovely heart shaped box that I kept for years.

I think of her now as I lay here in this hospital bed and I recognize who taught me and where my strength comes from. It is from Sr. Christine who lived a life of simplicity and faced many challenges with a joyous determination and simple understanding that things would be okay. It is also from many others in my ancestry who I love and revere, but those stories are for another time. For now, I simply thank that dear woman for teaching me and making me who I am. I hope that my actions in life can honor her.

The Continuing Process

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It’s 10pm on my third day at the epilepsy monitoring unit. My first visit here was three days. Tomorrow this will become my longest visit. Still no seizures. Tonight I’ll go to bed closer to my normal time. I’m told it’s not good to do sleep deprivation multiple days in a row. I am glad of that. Two nights in a row of going to bed at 3am was quite enough for me. We’ve stopped my seizure meds tonight too. I hope that this step pushes me into having some seizures.

It is so strange to hope for a seizure. I am in probably the safest place in the world to have a seizure, but still I am asking for something that I know gives me headaches and stomachaches and just generally can make me feel like absolute hell. I am also asking for something that I know always has that chance of killing me. It’s not a big possibility. SUDEP is pretty uncommon, but I am a middle aged woman who lives alone and has uncontrolled seizures. That puts me in a high risk category. So, even here in the safest place in the world asking for seizures seems such a risk.

I re-watched the documentary about the history of Mayo today. I’d watched in December too. I was reminded today that Dr. Charlie was the brother who did much of the work on brains. So, laying here in my hospital bed waiting for the seizures found myself calling on the spirit of Dr. Charlie to watch and guide. That’s it, that’s what I can do. I wonder how many patients every day call on the spirits of Dr. Charlie, Dr. Will and their father and the nuns.

What else is there to do with the crazy balance of fear and hope that comes with asking for lightning to strike in my own brain? I suppose I might again look at it as rebirthing in some way. If women looked only to labor, they would never give birth. I need to remind myself that my seizures right now are only the labor that I need to go through, the birthing to my new life. I believe that I will be seizure free. This is just a process for me.

When Will We Be Able to Breathe Again?

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The Minneapolis police murdered another Black man last night. Mr. George Floyd died, his airway crushed under knee of racism.

I watched a press conference this afternoon about the event. It was gathering of mostly African American leaders with a sprinkling of other people as well. I was struck by an elder standing near the mic. I didn’t catch his name. I think it might have been Frank something. He was Native. I don’t know his tribe. He wore the AIM uniform, an AIM t-shirt, jean jacket, and cowboy hat. His look reminded me of a hundred other friends I’ve known along the way and of a story.

I was reminded that we all come from around the same fire. Someday, if we are to survive we have to come back together be that new people.

This man died because he couldn’t breathe through the hatred and fear that held him down. Not his hatred, not his fear, the hatred and fear that is white and monied. The hatred and fear that chokes the life out of all of us.

It’s been over 500 years now. It’s long enough. It’s time to step out and celebrate the beauty of our differences. We are more than black and white. I know we’re still social distancing, but in whatever way you can, hold each other in your hearts, raise up the beauty, celebrate the strength, honor the struggles. Do whatever it is that you can to make it possible for all who are being crushed to breathe again.

Stories of a Lifetime

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My father was a storyteller.  His head held memories of a lifetime.  So much joy and some sorrow too, it seemed he never forgot anything.  He loved to laugh and share the tales of his mischievous youth and didn’t mind sometimes letting out some of the deeper stories too, those painful memories that made him.  

I used to love hearing how he and some of the other boys rigged up the firecrackers in Uncle Jake’s old farm truck, thinking that their cousin was going to be the one using the truck that day.  His eyes would just sparkle as he laughed talking about how fast they ran and hid when Uncle Jake jumped out of that truck swearing mad and ready to get whoever had played that trick.  

Sometimes there were other stories too.  I remember once Dad told me about working on the neighbor’s farm as a young man.  He’d skipped one day. I don’t remember why, if he was sick or just in a teenage moment of not wanting to work, but he skipped that day and it changed his world.  His co-worker was driving the farm truck. If Dad had been there he would have been in the truck too. The young man backed up the truck not seeing the farmer’s young child behind him.  The little one, maybe three or four years old, was killed. Dad never forgave himself for missing work that day. He always wondered if he had been there, would he have seen the child? 

Stories, stories, so many stories, they tell us who we are.  Dad is still with us, but the stories are gone or at least they are jumbled and confused.  Having a parent with dementia is hard. Having a parent with dementia during the times of COVID-19 is even harder.  

My father lives in a memory care unit and, like most facilities now, is not allowed visitors.  His recognition of people over the phone is non-existent and video calling doesn’t make sense to him, so it is as if he is both here and not here at the same time.  It is almost a preparation for his passing to have him in this world and yet not be able to reach him in any way.  

I called him for Easter.  I knew the phone might be a challenge, but I had to try.  I couldn’t leave him alone for the holiday. The staff person told me he was sleepy, but she’d take the phone to him in the dining area.  I could hear her explaining to him that he had a phone call, then explaining to him that the thing she was sharing with him was a phone. She told him to hold it to his ear and to say hello.  I said “Hi Dad, it’s Amy. I just wanted to call you to say Happy Easter and to tell you that I love you.” I hoped that hearing my voice would help him understand and that he would say something.  He said nothing.  

The staff person came back on the phone and apologized to me saying that it seemed he just didn’t understand what the phone was.  I told her it was okay and asked that she just let him know that I called and just to tell him Happy Easter and the family loves him.  

I wish I could be there just to hold his hand.  I got to hold his hand at Christmas time when he cried because he wanted to go see his mother.  It broke my heart to hold the hand of my 91 year old father and tell him that grandma wasn’t with us anymore, but now all I have is the hope that he can join her soon and leave his confusion and sorrow behind, that hope and the stories of a lifetime.